Community Forum

Hello out there...

I was diagnosed with UC when I was 15 and after going through many treatments over 10 years, I decided to have the 2 part J-pouch surgery when medications stopped working for me. That was in 2009. After making it through the muck in 2010, youd think this year would be a fresh start for me. Im stuck!

I constantly think about what life would be like if I had never had UC, if I never had all the complications, hospitalizations, medications, etc. Were not supposed to be defined by an illness, but yet, I think that because I was diagnosed at a younger age I also had to do a lot of growing up in a short amount of time and it definitely affected my emotional wellbeing.

In the past couple years, I have had a hard time maintaining friendships, I dont like being around a lot of people, Ive only dated one guy--& that was when my illness was at its worst so it didnt work out. I've become VERY introverted. Im very thankful for my health now after the 2 surgeries. I wish I had done the J-pouch procedure way back when I was 15. It is the best decision I have ever made for myself. I just cant shake the feeling that UC still "haunts" me in a sense, and that its best to be alone so that only I have to deal with these feelings/problems that I have with my health and my past.

Not looking for sympathy here, just looking for people who have experienced something similar, and maybe some sharing that theres hope to join the real world again.

Thanks!

Kristi

 Reply posted for kalishiti.

With what we go through (I had UC, now a jpouch), it leaves an impression on us. One thing I did was to start writing a narrative of my experiences. I am now up to 59 pages. 

 Reply posted for kalishiti.

I can relate to the relationship problems you mentioned.  The guy I was somewhat dating at the time of my diagnosis did not stick around long after I was diagnosed (I say "somewhat" because we live in different states).  He started off very supportive, even looked up all sorts of information about ulcerative colitis and proceeded to tell me how I should live my life - not being judgmental, just trying to help.  The amount of medication I was on really made me introverted also for a while, where I really did not feel like talking to anyone - that was our main form of communication!  He eventually started making rude comments like "we are going to talk about you again?" and telling him something my dr said inspired him to reply with "you are lucky to be alive" very sarcastically.  Thankfully he was just a boyfriend because if he was my husband, he would really stink at the "in sickness" part!

Since you are not looking for sympathy, I hope this at least brought a smile!

 Reply posted for kalishiti.

Congratulations on the successful surgery.   You should be celebrating my dear.  I read something years ago that has stuck with me......."live your life with no rear view mirrors".    You can't change your past, don't even look back, but you are in charge of your future.   Seeing a social worker may help you sort through any unsettling feelings and put you on the path of healing and living again. 

Lizzies Mom  

 Reply posted for kalishiti.

Well I was not as young as you when diagnosed; and have yet to have any surgeries (I do believe one is near however...thats another conversation) I do understand the "What Ifs" that you have. I was 20 when diagnosed; 13 years ago.

How would my life be different? Where would I be? Would I be happier? Would I be more confident? Would I have more friends?

As much of a pain in the @$$ these diseases are EVERY PUN intended of course (I have Crohns/UC & UP). There are times that I give in to the illness and all its "whoas" however more often I refuse to be defeated by it and fight harder. The bonus I guess is that you definitely find out who your true friends are and learn to appreciate the things in life that most people take advantage of.

 Some people wish for time to themselves, some wish to win the lotto...we wish for a day without pain and multiple bathroom trips!

 Reply posted for kalishiti.

  There is hope Kristi.

I was diagnosed with Crohns nearly 12 years ago and just recently had my 3rd sugery to remove a small bowel obstruction. I too have found it difficult to become close to people, let alone have a relationship. Either because I'm concerned no one would understand what it is like living with this disease or that my symptoms would get in the way.

I have tried various medications over the years to control my symptoms and only two seem to work. Pentasa and 6mp. However right now I have an Ostomy from my recent surgery. Hopefully in May I will have the Resection surgery.

Please know that you are not alone with this, there are people out there who understand what you are going through, and will support you.